Meet Jairam Naik, a resident of Ambarnath, who works for central railway. He has been working for the welfare of thalassaemia patients from the past 11 years. Naik volunteers at an NGO called Jivan Data which organises blood donation camps four times a year.
These camps are attended by over 250 people on average who come ahead to donate blood.
Speaking to My Medical Mantra, Naik said, “Red blood cells are required for these patients. Thalassaemia patients receive free treatment especially in government hospitals. These patients need red blood cells instead of blood. But all government hospitals do not have a blood component separation machine, which derives blood cells and plasma. This machine will be beneficial for the patients if they are set up in a government hospital.”
Naik further said, “People who receive a lot of blood transfusions are at risk for iron overload. Red blood cells contain a lot of iron, and over time, the iron from all of the transfusions can build up in the body. When it builds up, the iron collects in places like the heart, liver, and brain, and can make it hard for these organs to work properly. To prevent iron overload, people with thalassemia may need chelation therapy, which is when doctors give a medicine – either a pill or a shot under the skin – to remove excess iron before it builds up in the organs.”
Naik added, “Our workers also go to the villages Pune, Kolhapur and Washim districts and provide information about this disease to the people. Children are not being treated because there is lack of awareness among the people. At times, parents are unaware that their child is suffering from thalassaemia. If a mother or father has thalassemia minor themselves, then there child will develop thalassemia major. We take these children to hospitals for treatment (blood transfusion) and then return them to their parents.”
Naik also highlighted that there will be holding a rally in Pune, Kolhapur, Washim to raise awareness about thalassemia.”
Thalassaemia is often a struggle for patients affected with the disorder, one such patient is Abhishek Kamane who has the condition since he was a one year old boy. It has been 33 years since he has been living with this blood disorder. Although he hails from Satara, Maharashtra he visits St. George Hospital in Mumbai three times in a month for blood transfusions. His mother who was suffering from thalassaemia minor, passed away two years ago.
He said, “People should donate blood more often, so that there is less shortage of blood.”
Speaking to My Medical Mantra, Dr Madhukar Gaikwad, medical superintendent at St. George Hospital said, “The numbers of thalassaemia patients are increasing across the state. At the hospital, we have a separate ward for these patients. Currently we have 100 patients, out of which 13 are children. Patients from Mumbai and Maharashtra come to seek treatment at the hospital. Free blood is provided to the patients. Patients are cared for their specific needs. Apart from this, when also have a daycare centre, the patient can walk in for treatment in the morning and be discharged by evening.”
What is thalassaemia?
Thalassaemia is an inherited blood disorder in which the body makes an abnormal form of haemoglobin. Haemoglobin is the protein molecule in red blood cells that carries oxygen.
The disorder results in excessive destruction of red blood cells, which leads to anaemia. Anaemia is a condition in which your body doesn’t have enough normal, healthy red blood cells.
Thalassaemia minor is a less serious form of the disorder. There are two main forms of thalassemia that are more serious. In alpha thalassemia, at least one of the alpha globin genes has a mutation or abnormality. In beta thalassemia, the beta globin genes are affected.
Each of these forms of thalassaemia has different subtypes. The exact form you have will affect the severity of your symptoms and your outlook.